Share this article

Mrs Caliskan has started a support group, reaching out to other sufferers who are left to deal with the little-known condition.

In her case, surgeons had to remove about 85 per cent of the thickness of her skull bone, as well as the skin around it, for fear that the tumour had spread to the bone.

Mrs Caliskan said: 'I walk around for most of my life making sure I cover up my forehead.

Mrs Caliskan's bandages and padding are removed after her procedure, before her skin graft is put in place

Mrs Caliskan's prosthetic is molded and prepared to help cover up the massive amount of bone and skin she has lost

'I’m very self conscious and get very paranoid about it. Every so often I scratch some skin away from the graft, exposing some bone.

'But I want to be very open about DFSP, because it’s not a condition which is widely understood.

'It’s considered a good cancer to have because it rarely spreads to other parts of the body. It’s not a big killer.

'But the effect it has is quite devastating. It needs dramatic treatment.

'I am now in touch with hundreds of people from all over the world who have experienced the condition and at least 80 per cent of them carry significant scars.'

Mrs Caliskan was diagnosed of DFSP in 1996, after she went to the doctor complaining of a bump in the middle of her hairline that had been bothering her for months. They said it was a cyst, and told her to leave it alone, but it was soon diagnosed as DFSP

Mrs Caliskan was diagnosed of DFSP in 1996, after she went to the doctor complaining of a bump in the middle of her hairline.

The bump had been bothering her for months, and when she finally got it diagnosed, doctors did not originally suspect a tumour, telling her it would go away on its own.

She said: 'The doctor said it was a cyst and suggested I leave it alone.

'Such things usually go away on their own and are usually harmless so I left it for six months.

'But it just got bigger, so I asked for it to be removed.

'The procedure was meant to be quite simple - a quick surgery and a couple of stitches.

'I got a phone call two weeks later to say tests had come back and had confirmed I had cancer.

'I was 27 years old and I didn’t have a clue what lay ahead.'

Mrs Caliskan's scar heals on her forehead several months after her surgery, which consisted of removing the tumorous tentacles and soft tissue, followed by a major skin graft - she was originally told that the expansive tumour was a cyst that would go away on its own

The scar healed incredibly slowly, taking several months before the skin graft fully took hold and began to look like regular skin on her forehead, which now suffers a lack of about 85 per cent of the bone mass

She was told by doctors her tumour consisted of spindles and tentacles of cancerous cells spreading across her forehead and that surgery would be required.

She underwent two rounds of surgery in 1996 and 1998, and then in 2008, as she was about to celebrate ten years of living cancer-free, the tumour returned.

She said: 'The surgeon left just 15 per cent of the thickness of my skull bone.

Mrs Caliskan now has no nerves, muscle or soft tissue on her forehead, and has to wear an NHS prosthetic and wig to cover up the scarring

'I’ve got no muscle, nerves, soft tissue on my forehead.

'There’s nothing left. Over the top they laid animal collagen, and I had a skin graft over that.

'I now wear an NHS prosthetic under my hair to protect it, but I always need to be quite careful.'

Mrsd

Mrs Caliskan is now in remission, but has to stay vigilant against the cancer returning.

She started a Facebook page in 2008 specifically for other people who have been diagnosed with DFSP and are looking for answers.

Mrs Caliskan with her surgeon, Mr Ciaran Healy, who performed the extensive surgery to remove, and then replace, 85 per cent of her skull bone and skin

Mrs Calliskan said: 'When I was first diagnosed we didn’t have laptops or smartphones.

'Finding information felt like an uphill struggle.

'So when the cancer came back I decided to launch a group to reach out to other people who might benefit from hearing about others’ experiences.

Mrs Caliskan picture recently (left), following her successful surgery to remove the tumours. While she is positive about her recovery, she is worried it might return, and picture only a year after her surgery (right)

'For the first six months I was the only member. Then, a very anxious young woman from America found me and told me she had just been diagnosed.

'Now we have nearly 600 members and I’m assisted by administrators from America, Canada and Australia.

'Beyond a shadow of a doubt we have collected the biggest volume of information and personal accounts.

'Collectively we have access to more knowledge and information than any one doctor or hospital anywhere in them world. I feel very glad to be part of a group like that.'

Mrs Caliskan with her daughter Leah, now 22, at her graduation (left) - Leah took care of her mother for most of the time she took to recover from the massive operation. (Right) Mrs Caliskan before the DFSP returned

The group, which is named ‘DFSP - DERMATOFIBROSARCOMA PROTUBERANS’ on Facebook, is currently planning awareness-raising through the design of a lapel ribbon and is seeking official charity status.

She said: 'It’s an amazing feeling, as a one-in-a-million case, to meet another one-in-a-million case.

'You don’t feel as alone. I’ve made some amazing friends through the group.'

WHAT IS DERMATOFIBROSARCOMA PROTUBERANS?

Dermatofibrosarcoma Protuberans, or DFSP is a rare type of cancer that affects soft tissue and sometimes deep layers of the skin.

It is named for the tendency to have tentacles that grow into surrounding fat, muscle, skin and even bone.

It most commonly affects the torso, but can also be seen growing on the arms, legs, neck and head, and has a tendency to grow back in the same location after it is removed.

However, it only spreads to another part of the body around 5 per cent of the time.

It starts small, and usually grows slowly (over a period of months or years), and becomes raised and purplish or reddish.

DFSP usually affects people between the ages of 20 and 50, and there are about 1,000 diagnosed cases a year – with an incidence of about one to five people per million across the world.

It can be treated with a course of radiotherapy, followed by extensive surgery to remove the tumours.